Greeeaaat News! Renewed Hope for Stage IV

mccoomb

Posts: 15
Joined: Aug 2012

Sep 25, 2012 - 2:26 pm

After my skull met this spring and the tumor recurring in my remnant esoph and in lymph nodes in my neck Fox Chase has given me the impression that they feel nothing more can be done for me. They said "The Cat's Out of the Bag" and let's just see how you do on the chemo. So I have been feeling that my luck had run out and we can only prolong the inevitable.

Though this may be the case I have some renewed hope and a more positive outlook as of yesterday!

1. I am taking chemo again, so it is killing cancer cells, which is a psychological boost.

2. My new friend Pastor Chuck stopped in to pray with me and spoke with me for about an hour, lifting my spirits.

3. I contacted the U of Pitt which I have learned from this site is one of the top places for EC, and where they are said to work wonders with esophageal cancer, even with late stages. Their surgeon specializes in EC. The lady sounded positive on the phone and is receiving all my records to preview my case to work with me. It sounds like they are much less dismissive than other places have been lately, and that they are willing to fight for the patient who wants to continue to fight the good fightI

4. This fills me with renewed faith and an extra positive outlook, which had nearly extinguished in me.

5. I am researching an alternative medicine purported to kill cancer cells, and should I need to try this I will do so.

These developments all came in just when I was feeling I had run out of luck and out of options. I have to wonder if I am just deluding myself about a cure at this point, but the way I see it, that can't hurt me but only aids my positive attitude, which has sustained me I believe more than anthing else, for nearly three years now.

I am a recovering alcoholic with 25 years clean and sober. I have some experiece with faith and pulling a rabbit out of a hat when it comes to slim 'miracle' cures. I have been using most of the same tools I used for alcoholism/addiction recovery with my esophageal cancer ordeal. I am surviving now and working my way toward a few clean PET scans.

It seems I have been moving along an arc receiving the help I need just in the time they are ready with it. A case in point is that my doctor said of my esophajectomy, that they would not have even tried it 15 or 20 years ago. They also curt out half my stomach and pulled it up into my chest. This procedure has bought me a few years, so that I may try other treatments to keep going. May the timing continue to be on my sideI

Hello Mitch,
Love your positive attitude. Glad you're getting other opinions. I say "other" because I believe you will fight while looking at all options.If and when you decide enough is enough,I beleive your faith will sustain you.

I hope I can be that optimistic. I just found that my EC has moved into the lymph nodes in my neck last week 12 weeks after my surgery. WE did a PET scan toady and will have the results and plan tomorrow. Hubby and I are devastated but are trying to be optimistic. What chemo are they using this round for the lymph nodes?

They are giving me cisplatin (again) and 5FU (again) and new this time Taxotere,
which is really ripping my insides up from the roof of my mouth on down.
Sometimes the best I can do is be grateful that I am at the beginning of my
terminal illness and not at the end of it. Sometimes it is only something as
small as this that can help. Also, though I know I have some nasty stuff on
the way, I don't feel it yet so I am not going to allow it to destroy my
peace of mind today. I do not fear dying, I just feel sad because I am only 51,
and I feel there are some things I still wanted to experience.

i am walking in the same shoes you are. i am also 51 with ec. i came down with it about 1 year ago. at first they gave me carboplatin and taxotere and radation with a poor out come. i now have bone mets and have moved over to OSU medical center for more chemo. i take 5fu and 2 others and it is working. my doc has never told me how long i may live and i have not ask. for now i am just living my live to the max. good luck buddy

I hope I can be that optimistic. I just found that my EC has moved into the lymph nodes in my neck last week 12 weeks after my surgery. WE did a PET scan today and will have the results and plan tomorrow. Hubby and I are devastated but are trying to be optimistic. What chemo are they using this round for the lymph nodes?

I debated about whether to share our expereince but decided to after remembering how difficult it was to deal with being so hopeful and then having to process the reality. My husband was Stage 3 with local involvement of several lymph nodes at diagnosis. Had Chemo/radiation. PET and CT and even an EUS done at UPMC in preperation for Dr. Luketich doing an esophagectomy. The month before surgery everything was NED. On the day of surgery--when my husband was already sedated they told us he had a possible liver met picked up on the previous days ct scan. It was resected and the esophagectomy did not happen. My husband is now on 5fu and herecptin. I found Dr. Luketich to be very straightforward but his new and much younger associate Dr. Levy was very much "in" to how great their stats were, how aggressive their surgical practice was etc...and told us that esophagectomy wss still a good possibility etc...They then had Dr. Gibson, an oncologist meet with us. He was truly kind. truthful and informative and told us that in fact, having an esophagectomy after detecting liver metastisis was probab;y less than one or two percent. UPMC is among the very best and Dr. Luketich possibly the best surgeon and hope for many EC patients--however, it was very hard to have soaring hopes dashed (obviously not their fault in any way that the ca had metastisized. I guess I'm sharing this because I wish we had been a bit more realistic at the start and also having to then deal with the fact that surgery was probably never going to be an option despite the post-op pep talk was very painful. My husband had to process this all immed. post-op. Betsy

Thanks for sharing Betsy. I appreciate your upfront honesty. I realize I am still looking at an uphill ordeal and the woman on the phone from the U of Pitt let me know that there are of curse, no guarantees and no promises that can be made. I am on a journey where I am learning so much. What I do is like Ray just said, live life to the fullest. Best advice for everyone everywhere. I have no llusions about just what a monsterous illness this is. But if there is a loophole I will find it, and if I run out of solutions then it just means it's time for me to live somewhere else. God help us all! Mitch

I myself was diagnosed with stage 4 oesophageal cancer which had already spread to distance lymph nodes 2 years ago,had the standard 28 days of radiotherapy and 2 rounds of chemotherapy...recently had a tumour removed from my small bowel which turned out to be cancerous,then 2 weeks later i started getting the swallowing dysphigia again.Pet scan shows i have it back in my oesophagous and also still in my small bowel but fortunatley nowhere else.The doctor tells me straight up that the only option now is chemo and see if i can get some positive results.At first i was devastated and couldnt believe it come back so quick with the sudden symptoms but after a few weeks i have calmed down and pulled myself together,pulled out the big guns and ready to get back to the front line,so to speak.The doctors dont know %100 what the outcome will be,or how long a person has,they can only speculate,go on medical evidence,look at the tests,cant really say they dont do marvellous work though and honeslty most of us wouldnt be here if it wasnt for medical science but i guess what im trying to say is that nobody and nothing can put a limit or a time on somebodys will to FIGHT.
I started chemotherapy yesterday and have been taking steriods which has improved my swallowing dramatically so it has lifted my spirits way back up to where i can have a pro active approach to it all.Dont get me wrong....I feel like absolute crap but hey it comes with the territory and i think it will pass eventually.
Im 37 and i too feel somewhat like my life is incomplete,i dont have kids,not married and there is many many more things that i want to do.The oncologist told me the other day that this will take my life eventually and im a realist and i know its probably true but i still have some damn good fight in me left yet!
Maybe i will die in the jungles of borneo getting attacked by an angry mob of orangutans,or a big white shark will bite my leg off out surfing?i dont know.nobody knows...i have decided while im alive i am going to be ALIVE...as soon as any of us as an individual give up on ourselves we are sure to be already dead on the inside...
Its people like you mitch that give me even more strength and i hope in some way what i say makes sense to you or anyone else that reads this.
I do tend to ramble on a little...hehe
dantheman

Dan I understand everything you are going through. And I especially appreciate your line about never giving up, and continuing to fight in the face of all adversitry! Who knows, we could have years yet! Either way, I say do what makes you happy, as we know life is just too short. I never married or had kids either, and I used to fret about that, the kid part anyhow, but I just think now it was not in the cards for me. I have had a lot of hurdles to overcome in my life and it could be I may not have had the wearwithall to handle raising children. I am satisfied with my life now, of course I wouldn't mind the cancer gone, but i don't ask Why me or say Life is not fair. Life just is what it is, and there is no one who gets out of this world without grief, some more than others. Keep in touch Dan, and good luck to us all!

Mitch,
What a great positive attitude. I hope the doctors at Univ. of Pitt (or another second opinion) will be focused to help you continue your fight in the method you find best for your life. It is your choice on how you want to fight this cancer.
As you said, why not go with the positive mentality. It helps you in so many ways.
Also, if you want, Univ. Of Penn will do a paper review of your case and give you an opinion. (watch for Philly politics).

FC has its strength and weaknesses, but just my opinion, we did not find them willing to fight with us in Stage IV, after they did 2 types of chemo. Though I hate to say it so bluntly , but we also found them lacking for hospice, and left for my husband last months to a more people focused hospital.

You are a fighter and that alone is going to give you the strengh you need to fight this monster. My husband has been battling this monster as well. He has severe pain in his lower back now. Do you have pain? He is on strong meds but don't seem to help much. He has lost lots of weight and he is very weak at the moment. His oncologist is making the arragements for him to go to Dana Farber next week for a second opinion. He is considered stage 4. Reading your posts really inspires me. Thank you.

Hi Helena51- We help each other here, and in so doing draw and share strength from each other. I had more pain before in my back, sides and even one horrible pain down my arm which persists to this day, and for which I had to see a pain specialist. The pain meds they gave me did help, and then they cut out the tumors. I am starting to get pain again because another tumor has come back again; it is pain now mostly when I swallow, but again, the medication certainly does help. When the tumors have become large so that even pills hurt to swallow, they gave me liquid pain medication. I just feel like to Hell with these tumors; I do not have time to succumb to them. I am too busy trying to squeeze out whatever life is mine. I am an artist, and I am now painting frantically you might say. I am busy living. I probably could have done this with much more focus when I was living with the assumption that I had a 'normal' life span. But we start from today. i always ask "What can I do about that now?" and if I can alter something I do. But I try not to waste time with regrets, like "Should I have done what that specialist said, or that one?" What a gift, each day, Life!-Mitch Coombs
mccoomb
mitchpcoombs@hotmail.com
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Thanks Mitch for sharing. Can you tell me what meds helped with the pain? My husband had a PET scan today, we will know the results this afternoon. I am very afraid of what the news may be only because he has been in so much pain and not wanting to eat. He is the Hospital. I am taking him to Dana Farber Friday to see what they can do, I am still hoping.
Helena

Hi Helena, for pain they give me oxycodone, also morphine sulfate in pill form, and also in liquid form because sometimes pills hurt when I swallow. This is because a tumor is back in my remnant esophagus. It can wear on you sometimes. It seems every time I turn around there is more cancer. I had a lot of pain in my chest and sides and one arm and back, two years ago with the first occurrence of the cancer. Let me know how the pet scan goes. I get a pet scan tomorrow and I am midway done my chemo this time around so it is our hope that the tumor will be no larger, even smaller. Enjoying every good day! Good luck! Mitch

Mitch - you mentioned an alternative you've researched that you may use when the chemo has done all it can. What is it? I'm interested in alternatives as possible complementary treatments even now. The one I'm most interested in that I haven't tried it at all yet is Low Dose Naltrexone which I've heard good things about both here and elsewhere....

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